Treatments for Klippel-Trenaunay Syndrome in Children

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Treatment for Klippel-Trenaunay syndrome (KTS) falls into several categories:

Supportive care for Klippel-Trenaunay syndrome

  • Compression garments—Your doctor may recommend that your child wear tight-fitting pieces of clothing on the affected limb to reduce pain and swelling. They can also help protect your child’s limb from bumps and scrapes, which can cause bleeding.
  • Heel inserts—If your child’s legs are slightly different lengths (less than one inch difference), a heel insert can help your child walk normally.
  • Anticoagulant therapy—One of the biggest potential risks of KTS is that a blood clot formed in the abnormal blood vessels may break off and make its way to your child’s heart or lungs. Your doctor may recommend medications that thin your child’s blood to help prevent blood clots from forming.
  • Other medications—Your doctor may also recommend various pain medications and antibiotic medications for your child.

Surgical care for Klippel-Trenaunay syndrome

  • Orthopedic CenterKTS can cause your child’s foot or leg to become excessively large; in some cases your doctor may recommend an operation.
    • An orthopedic surgeon can reshape your child’s foot to help him fit it into a shoe.
    • An orthopedic surgeon can perform a procedure called epiphysiodesis, which interrupts the growth plate and stops the leg from growing when it’s reached a certain length.
      • Our skilled orthopedic surgeons can estimate how long your child’s leg will be when it’s fully grown. Then, when the affected leg reaches that length, they perform this procedure to stop it from growing longer.

We only perform epiphysiodesis if the expected difference between the length of your child’s legs is greater than an inch—and typically the operation is done when your child is between 10 and 14 years old.

  • Other surgeries—Your doctor may recommend one of these other surgical procedures if your child’s symptoms call for it.
    • A surgeon can remove some of your child’s excessive problematic veins.
    • A surgeon can also help reduce the size of your child’s affected limb with a debulking procedure, in which many of the abnormal vessels and some of the overgrown tissue is removed. 
  • Sclerotherapy —To help shrink and eliminate your child’s abnormal veins in the affected area, your doctor may propose the injection of an irritating solution, which causes the veins to collapse. One of our experienced interventional radiologists can perform this procedure.
  • Laser therapy—Pulsed dye laser treatments can help lighten your child’s capillary malformation (port wine stain). Laser treatment can also speed healing if your child’s lesion begins to bleed.

What kind of support will we receive?

At Boston Children’s we consider you and your child integral parts of the care team and not simply recipients of care. Your care team will be with you every step of the way to ensure that you and your child are getting the support you need.

Your child's physician and other members of your care team will work with you to set up a schedule of follow-up visits.

Rehabilitation for children with Klippel-Trenaunay syndrome

Children with KTS often need multidisciplinary care. Some specialists your doctor may recommend for your child include the following:

Depending on your child’s symptoms and the progression of the disease, we may also bring in the following specialists.

  • Physical therapists—KTS can affect your child’s arm or leg, making it hard or painful for your child to move it. A physical therapist can help ease the pain and increase your child’s range of movement.
  • Occupational therapists—Children with KTS sometimes get behind on developing motor skills because of physical problems related to the disease. An occupational therapist can get your child back on track.
  • Counselors—One characteristic of KTS is the typically large capillary malformation (port wine stain) on your child’s skin. As your child gets older, he or she may be uncomfortable with that skin lesion. One of our counselors can help your child deal with the psychological and social issues related to having a birthmark.
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- Sandra L. Fenwick, President and CEO

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